Are Caregivers Getting the Support They Need in America?

Family caregivers face relentless demands, often sacrificing their own well-being. The constant responsibilities can lead to physical and mental health struggles, career stagnation, overwhelming guilt, and anxiety about the future.

In a survey conducted by USA TODAY starting in May, nearly 450 respondents shared their experiences and suggested ways to improve caregiving in the U.S. Many expressed the need for practical solutions, such as respite time and mental health support.

Respondents described situations like one caregiver who wished for occasional days off, while another struggled with the fear of leaving a parent alone even for simple errands. The question arises: can universal respite care or free mental health services become a reality in the U.S.?

Possibilities for Universal In-Home Care

Experts like Ai-jen Poo of Caring Across Generations argue that universal in-home and respite care could be achieved with federal funding. She highlighted former President Bidens American Jobs Plan, which proposed $400 billion for Medicaids home and community-based services. This program supports around 70% of Americans receiving in-home care. The plan aimed to remove waiting lists and increase wages for home care workers, though it was never fully realized, and subsequent policy changes reduced funding.

Poo remains optimistic that future initiatives could expand Medicare-funded at-home care without income restrictions. However, Diane Ty from the Milken Institute notes challenges due to a shortage of trained caregivers. Some private companies, including Bright Horizons and Care.com, already offer emergency backup care for employees.

Theres also bipartisan legislation under consideration that would provide up to $5,000 in federal tax credits for caregiver expenses, including respite care.

Guidance and Resources for Caregivers

Many caregivers seek a central resource for advice on medical equipment, insurance, social security, and legal matters. Care concierge platforms and AI tools are helping meet this need, with companies like Wellthy, Cariloop, and Ianacare providing support. However, many caregivers do not self-identify as such and may overlook available benefits.

Care managers, who cost $50-$200 per hour, provide personalized care planning, though insurance coverage is limited. Online services like Care.com and Caregiving.com offer lower-cost advisory and free resources, while the 211 hotline provides caregiver-specific assistance in multiple states.

Mental Health Support Challenges

Survey respondents emphasized the need for mental health assistance and emotional support, ideally at no cost. Employee assistance programs, end-of-life doulas, hospice counseling, and caregiver support groups exist, but universal free therapy is unlikely due to shortages of mental health professionals.

Waiting lists for youth and adult mental health counselors remain long, creating anxiety for families with high caregiving demands.

Paid Family Caregiver Programs

Some states provide paid family caregiver programs via Medicaid or Veterans Affairs. Californias model is often cited as one of the best. Expanding these programs nationwide requires federal support. Startups like RubyWell are experimenting with partnerships to train and pay family caregivers directly.

Families who earn too much to qualify for federal support yet too little to afford private assistance remain a difficult challenge. Advocates continue to push for universal health care and more stable, affordable insurance options for caregivers.

Overall, while there are existing initiatives and private solutions, comprehensive national support for caregiversincluding paid leave, respite care, and mental health servicesremains a work in progress.

Author: Caleb Jennings